posted
Anyone able to explain how Lyme can be mistaken for mono? Thanks.
Posts: 13 | From PA | Registered: May 2008
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I don't know how it happens. All I can say is that my daughter was diagnosed with the worse case of mono they CLAIMED they ever saw. They ended up giving her steroids since it was so bad.
Later found it was actually lyme with bartonella which probably was the lymph node confussion, but I really don't know how they confuse these.
Perhaps since they LOOK for mono but turn a blind eye to Lyme?????????
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Do you mean mono, or EBV, the virus that causes mono?
If you mean EBV, then you will find that a lot of people here have high EBV titers.
In my opinion, lyme and co. wear down the immune system, thus allowing viruses that are dormant in your body to reactivate and replicate, thus resulting in high titers.
Since EBV is very common, most adults are carriers of it.
For myself, I tested with high EBV titers last fall, and only recently tested positive for coinfections.
I still do not test positive for lyme, but have many symptoms.
posted
Thank you for the responses. I tested over 3000 for EBV titres about 2 years ago. I just got back WB from Igenex showing + for one band, p31, but it says that a false positive can occur if one has had EBV before. So, I immediately remembered I had a high EBV titer. I also have an IND for p39. What do you make of these results?
My regular doc wants to treat the EBV with Valtrex, if a new blood test shows a still high titers. My LLMD says she has never heard of Valtrex for EBV. I'm not sure she's right, which is disappointing.
I can't put into words how grateful I am for your help.
Posts: 13 | From PA | Registered: May 2008
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
Lymemommy, were you high for EBV on IgG or IgM?
Mine was high IgG and even an internist who I saw (only twice because he was unsympathetic to the idea of chronic lyme) commented on how high it was when I showed him the test results from my LLMD.
He asked when I had mono and I said "never" which is true as far as I know.
Posts: 1302 | From USA | Registered: Dec 2002
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"Many would say the " +/-" equivocal ["IND"] bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.
The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track.
Instead of ignoring these, they should be a red flag to keep pursuing a laboratory diagnosis. Giving patients 4 weeks of antibiotics (usually tetracycline, 500 mg, 3 times a day), will convert a negative or equivocal Western blot to positive in about 36% of cases."
Band 39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
Mariarosa, if your lyme test is coming up neg, but you are showing a couple of bands, then perhaps your immune system is too wiped out to react much to lyme.
Have you tested for coinfections? Coinfections would also wear down your immune system.
You don't have to have had mono to have EBV antibodies, in fact if you contract EBV as a child, you might just think that it was a nasty cold.
It only turns into full blown mono when you contract it later in life.
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Lymetoo~ I've seen people with LOTS of positive lyme specific bands (including band 39) who did NOT have lyme disease.
They were sick with: Parvo virus HHV-6 Brucellosis or were just plain healthy (these are 4 different people that I have talked with and gone over their lyme WB tests with)
Seriously....showing lyme specific bands does NOT mean you have lyme disease.
It is important to get an accurate diagnosis.
To say that someone has lyme without getting a thorough workup for Cpn, HHV-6, EBV, Parvo, other viruses and other medical conditions is not wise.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
If only band 30 and 31 test positive, then you can get a confirmation test called 30/31 confirmation test to rule out the EBV being the reason for the positives on the WB. Other than that, I think other bands are still likely to be Lyme and not as likely to be cross-reactivity.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Yes, I think band 39 is specific and to say that the people did not have Lyme might be rephrased as "The person does not yet recognize that they have Lyme disease."
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
it's not clear cut, but to say that someone has a positive band and are not sick with lyme is not a call anyone of us can make.
Even with no bands and a negative test - we could not say that person did not have lyme because don't have all the details.
There may be other considerations, as pointed out, but to say that anyone does not have lyme is impossible for us to know.
I do agree that looking into other stealth infections is vital.
I just found out I have HHV-6 and Cpn after years of wondering. But, it did not negate the lyme tests.
Sadly, so much of this can coexist. It's a swirl. However, a good doctor, upon consideration, can begin to untangle.
If lyme is present, and tests or clinical dx are positive for other infections, it might be those should be treated first, or in a particular order - hopefully, with some falling off the radar as a treatment might cover several bases at once. That is where the excellent doctors can shine.
posted
Yes, I was tested for coinfections and had none. I don't understand why Igenex states in the results that P31 can be a false positive if one has had EBV b/c most of the population has antibodies to EBV, therefore most of the population cannot rely on the P31 result.
Posts: 13 | From PA | Registered: May 2008
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quote:Originally posted by Keebler: It's not clear cut, but to say that someone has a positive band and are not sick with lyme is not a call anyone of us can make.
Even with no bands and a negative test - we could not say that person did not have lyme because don't have all the details.
There may be other considerations, as pointed out, but to say that anyone does not have lyme is impossible for us to know.
I do agree that looking into other stealth infections is vital.
Ditto!!
Yes, marie... I think the explanation helps SOOO much!
PS.. Why do you refer to the bands as "P"39 etc?? Where did you get the P? Just wondering.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
please check out TREEPATORL'S LINKS FOR NEWBIES ARCHIVE...
this is one of the good ones there...
ART DOUGHERTY'S MISDIAGNOSED .... ****************************
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Is your viral IgG or IgM positive or both?
Many doctor's argue that IgG positive means nothing, simply past exposure - even the test itself reads clearly if only the IgG is positive "past exposure" and "that nearly 100% of the population has a positive IgG" because we are all exposed to these virues and carry them dormant in our spine.
I just spoke with my ILADS LLMD who was in the forefront of HIV in the 80's - he knows viral issues in my opinion very well. He totally disagrees with Standford Md's that claim IgG is an active virus..he insists it must be IgM positive, no mater what they say.
Go figure - two Md's, two different opinions.
No matter if the IgG or IgM are positive on your viral tests I would NOT rule out Lyme. I have BOTH...it is not uncommon to have both.
Igenex makes it clear on their tests that IND's are significant - and should not be considered negative.
The way I understand it, 39 alone can mean LD. 30-31 are the bands that cross react with virusess.
IGeneX offers a new 30-31kDa Confirmation IgG and IgM test. If results from the initial Western Blot are positive for bands 30 or 31, it is possible that these could be due to cross-reactivity with several different types of viruses. In this confirmatory test, highly specific recombinant antigens are used to validate that the positive result is not due to cross-reaction with viruses.
I have both Lyme and EBV among other viruses some started IgM positive and are now only IgG positive, which my LLMD will not acknowledge unless the IgM is positive...it not uncommon to have lyme and viral co-infections.
I have been on Valtrex almost 2 years, viral titers are dropping slowly but surely on all viruses including HHV6 - which Valtrex shouldn't even work on, but it is. Valcyte according to my LLMD is a miserable drug and there are many other choices to try first.
quote:Originally posted by mariarosa: I just got back WB from Igenex showing + for one band, p31, but it says that a false positive can occur if one has had EBV before.
Yes, call Igenex and ask for the confirmation test as lymebytes suggested. May help!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Also look on igenex site if a certain two bands are PRESENT along with 30/31 confirmation test is not needed. Meaning it points more towards lyme These bands are :
23-25
39
34
41
83-93
Present meaning positive or ind. according to Dr. Harris
Posts: 115 | From warwick, new york | Registered: Mar 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Regarding lymebytes comment that her/his LLMD feels that high IgG titers do not correlate with active infection....
My IgG titers were high. Not my IgM. I had tissue positive IHC testing for the virus that had high IgG titers (meaning active infection).
Those IgG titers dropped to normal with appropriate antiviral treatment.
And I've seen improvements in my health.
This is all very new info. Very new. The research done on my tissue is quite new, and is being done for research purposes. My guess is that shortly (maybe even at this year's lyme conference) the LLMDs will know a lot more about viruses then they do now.
I'm just trying to help you all out to consider viruses too.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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